Expert Q&A: Supporting siblings of autistic children with aggressive behaviorsSeptember 28, 2022
Every sibling relationship has its ups and downs, and this is no different for siblings of autistic children. Having a sibling with autism brings many joys, but when an autistic sibling exhibits aggression or other severe behaviors, it can be especially challenging for the other child and have long term effects if unaddressed.
It's important for parents and caregivers to know how to support their children through these challenges by acknowledging their feelings, keeping lines of communication open and teaching healthy coping strategies. Support groups can be a valuable tool, giving both siblings and parents a safe space to share their experiences and learn new skills.
In this Q&A, sibling researcher Emily Rubin, LICSW, shares information about siblings experiencing aggression from autistic brothers and sisters.
Emily is director of sibling support at the Eunice Kennedy Shriver Center at UMass Chan Medical School, and she developed a free virtual program to support siblings and caregivers. To join the program or learn more, please contact Emily at email@example.com or (857) 523-1145.
How do aggression and other severe behaviors impact siblings of children with autism and other developmental disorders?
Research tells us that in general, there’s no significant difference in developmental outcomes between siblings of typically developing children and the majority of siblings that have brothers or sisters with disabilities. But it’s a different picture when you’re dealing with siblings of children with severe behavioral challenges, because once aggression or violence enters the picture, it can create trauma.
It can be very isolating if you are growing up with a brother or sister who is aggressive or destructive and lashing out at you, whether they are autistic or not. It can start to feel like your world isn’t safe, you’re alone and people don’t understand what you’re going through.
When siblings are targets of physical or verbal aggression by a brother or sister, they tend to experience resentment and anger. There is also a pervasive sense of confusion, because it doesn’t make sense to the sibling why their parents are treating them one way and the brother or sister in another way. There can be shame or embarrassment, and these siblings might not want to invite friends over. The more intense the behavioral challenges, the more intense these factors become.
Another pattern I’ve observed is that siblings of children with behavioral challenges don’t want to burden their parents. They keep their personal worries to themselves, and as a result, they often end up not having many connections with adults who they can process things with. Many siblings struggle with anxiety and depression because they’re dealing with trauma on their own and carrying difficult emotional baggage at a young age.
In adulthood, this might lead to them cutting off contact with their sibling because they feel abused and victimized. However, this can be mitigated if there are interventions and supports for the whole family.
What work are you doing to address these issues?
Right now, I have two programs underway. The Sibling Support Program: A Family-Centered Mental Health Initiative is a community-based program offered by UMass Chan Medical School. This is a free, virtual, monthly program for siblings and caregivers of children with behavioral health needs. We welcome family members of children with many different diagnoses, ranging from autism spectrum disorder (ASD) to early onset schizophrenia. The program is available at the national level, not only for Massachusetts residents.
The other is a research study looking at the impact of our sibling support program on siblings of children with ASD compared to siblings of children with other disabilities. We’re looking at whether the support program can minimize the impact of trauma by providing a safe space for siblings to share their stories and teaching coping skills.
What makes your sibling support program unique?
Our program is unique primarily because we provide support and resources for all family members of the affected child, not just the siblings. The Sibling Support Program: A Family-Centered Mental Health Initiative consists of virtual groups for caregivers and siblings held simultaneously.
Our sibling groups are led by psychiatry residents and trainees at UMass Chan Medical School. Our clinicians create a welcoming space for siblings to share their stories, process their trauma, learn coping skills and understand that they’re not alone—that there are caring adults who understand the stressors of growing up with a brother or sister who has behavioral needs. Not only are we delivering a service for families, but we’re also training clinicians in how to work in a very holistic, family-centered way with families of people with autism and other diagnoses.
We also have groups specifically for parents and caregivers so that siblings and parents have separate safe spaces. The caregiver groups are not run by a clinician but by a parent mentor who has similar lived experiences. The caregiver groups focus on the sibling experience, parenting strategies that help build sibling resiliency and mitigate the effects of trauma, and resource sharing to strengthen the family unit. Our goal is to work with the whole family to help them understand the impact on the sibling and help them develop new skills and new language to talk about what’s happening at home.
The reason we meet with siblings and caregivers separately is that we don’t want the siblings to feel inhibited when sharing their experience. And the same is true for the parents—they benefit from a private Zoom group where they don’t have to censor themselves or worry they might say something that the sibling could misinterpret. This arrangement helps siblings feel validated and understood, while allowing parents and caregivers the opportunity to learn alongside non-judgmental peers.
How can families sign up?
Families interested in the Sibling Support Program: A Family-Centered Mental Health Initiative can contact me directly at firstname.lastname@example.org or (857) 523-1145. They will receive information about the program, a permission form and Zoom link to log in.
Registration is required. The group meets on the first Thursday night of each month at 5:30 p.m. EST, starting on January 5, 2023. Learn how to get involved.
What tips would you give to parents looking to support their typically developing children through some of these challenges?
My first tip is to talk openly and honestly with the sibling about the behavioral issues. Children should never have to keep secrets about scary things happening at home – that leads to more problems. It’s also important to use age-appropriate language. In general, the younger a child is, the simpler you want your explanations to be.
Another tip is to help kids to have their own lives and identities outside of their identity as a sibling. Every child needs to feel like they’re good at something, and every child should have opportunities to shine, whether that’s through their own hobbies, sports, or other activities. They should also have breathing room and personal space where they can go when things get chaotic.
Lastly, if there is more than one parent in the household, using multiple modes of transportation—such as a car and public transportation—to do family activities is helpful. That way, if the child with autism has a meltdown or is overstimulated, the sibling can still participate in the activity. Because that’s where a lot of resentment comes in—when siblings’ opportunities to do things are interrupted because their brother or sister has a meltdown.
Learn how to get involved in the 2023 series of the sibling support program
Participate in the sibling support group at UMass Chan Medical School
Read one sibling’s experience coping with his brother’s severe behaviors
Download our Sibling's Guide to Autism to learn more about autism and how to support an autistic sibling